NCT07839637

Completed

Survey on Multiple Osteochondromas and Enchondromatoses Duri...

Istituto Ortopedico Rizzoli Source

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Other study identifiers

Sponsor study identifier

563/2025/Oss/IOR

Study Type

observational

Actual enrollment (reported)

91

Locations

1 country

Sites

1

Timeline

Study Start

November 24, 2025

Actual (reported)

Primary Completion

January 24, 2026

Actual (reported)

Study Completion

September 18, 2026

Actual (reported)

Brief Summary

This prospective observational study aims to understand the transition experiences and unmet needs of patients living with multiple osteochondromas or enchondromatoses during the paediatric to adult care, in order to produce a Patient Journey by collecting data through an online survey.

Registry Overview

Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.

Recruitment status: completed
Actual enrollment (reported): 91 participants
Study completion date: September 18, 2026
Actual (reported)
Listed locations: 1 countries · 1 sites

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.

Study Start
November 24, 2025
Actual (reported)
First Submitted
December 16, 2025
Actual (reported)
Primary Completion
January 24, 2026
Actual (reported)
Study Completion
September 18, 2026
Actual (reported)
First Posted
September 24, 2026
Actual (reported)

Last Updated: September 24, 2026
Status Verified: September 2026
Last Update Submitted: September 21, 2026

Conditions

Enchondromatosis Multiple Osteochondroma

Outcome Measures

Primary Outcomes (1)

Self reported experience of transition from paediatric to adult care
Investigate via self-reporting tool used to evaluate the clinical symptoms experienced by adult patients subjective experiences of the transition phase in order to develop a Patient Journey that highlights clinical and psycosocial needs, care and gaps
Baseline, at the completion of the online questionnaire

Eligibility Criteria

Age18 Years+

Sexall

Healthy VolunteersYes

Age GroupsAdult (18-64), Older Adult (65+)

Sampling MethodNon-Probability Sample

Study Population

Individuals with enchondromatoses or multiple osteochondromas.

You may qualify if:

Adult subjects (≥ 18 years) affected by multiple osteochondromas or enchondromatoses.

You may not qualify if:

Sponsors & Collaborators

Istituto Ortopedico Rizzoli
Otherlead

Study Sites (1)

IRCCS Istituto Ortopedico Rizzoli

Bologna, 40136, Italy

MeSH Terms

Conditions

Exostoses, Multiple HereditaryEnchondromatosis

Condition Hierarchy (Ancestors)

OsteochondromatosisOsteochondromaNeoplasms, Bone TissueNeoplasms, Connective TissueNeoplasms, Connective and Soft TissueNeoplasms by Histologic TypeNeoplasmsNeoplastic Syndromes, HereditaryOsteochondrodysplasiasBone Diseases, DevelopmentalBone DiseasesMusculoskeletal DiseasesExostoses

Enrollment

91 participants (actual enrollment reported by the registry).

Study Design

Study Type: observational
Observational Model: COHORT
Time Perspective: PROSPECTIVE
Sponsor Type: OTHER
Responsible Party: PRINCIPAL INVESTIGATOR
PI Title: Director of Department of Rare Skeletal Disorders

Study Record Dates

First Submitted

December 16, 2025

First Posted

September 24, 2026

Study Start

November 24, 2025

Actual (reported)

NCT04133285

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Recruiting

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Phase 2Terminated

NCT00474448

The Health-Related Quality of Life in Patients With Hereditary Multiple Exostoses

Completed

NCT00474331

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Suspended

NCT00473850

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Terminated

Subjects not affected by multiple osteochondromas or enchondromatoses.
Minors

Contact the study team to confirm eligibility.

Hyperostosis

Genetic Diseases, Inborn

Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Primary Completion

January 24, 2026

Actual (reported)

Study Completion

September 18, 2026

Actual (reported)

Last Updated

September 24, 2026

Record last verified: 2026-09

Source record

Download the complete ClinicalTrials.gov record imported by Syfrah, including fields not shown in this page. The registry may contain a newer revision.

Source: ClinicalTrials.gov.

JSON downloads include source attribution and retrieval details alongside the unchanged original record or the separately normalized values.

Registry identifier: NCT07839637
Data provider: ClinicalTrials.gov
Source updated: 2026-09-24
Normalization version: ctgov-legacy-1

Open registry record

Source retrieved: 2026-10-25 22:34:53 UTC

Locations

IT(1)

Brief Summary

Registry Overview

Trial Relationships

Related Scientific Literature

Study Timeline

Study Start

First Submitted

Primary Completion

Study Completion

First Posted

Conditions

Outcome Measures

Primary Outcomes (1)

Eligibility Criteria

You may qualify if:

You may not qualify if:

Sponsors & Collaborators

Study Sites (1)

MeSH Terms

Conditions

Condition Hierarchy (Ancestors)

Enrollment

Study Design

Study Record Dates

Source record

Locations